Hi, aztecnitemare. Welcome to the forum!
I'm sorry you weren't taken seriously for so long. That's fairly typical with MG symptoms. I guess that first doctor didn't realize that an MRI would not show anything in MG! What did s/he do an MRI of? What is useful is a CT scan of someone's thymus, which can show thymic hyperplasia or a thymic tumor. Don't worry, on the rare occasion that someone has a tumor, they can be benign.
The AChR binding antibody test is NOT a useless test!!! You have a positive result, which indicates that you do have myasthenia gravis.
ARBI - Clinical: Acetylcholine Receptor (Muscle AChR) Binding Antibody, Serum
Do you know if they did the AChR modulating test as well? If you don't have the results, please have them sent to you. You'll need them for your records and to give to your other doctors.
Do you live in the US? Or Mexico, given your forum name? If we can point you in the direction of a MG expert, let us know.
Those "spells," as you call them, are what is known as a "MG crisis." That's the point where not enough acetylcholine (us-seat-ill-co-lean) is making it to your muscles and they become very weak. You can have difficulty swallowing, breathing, or moving. Before that point is when a person needs to dial 911 and have hospital help.
You should find a good pulmonologist as well. They need to assess your breathing and follow your care. Neurologists and pulmonologists work together when someone is in the hospital, since a MG crisis causes such difficulty with breathing. So you need both doctors for your MG care.
There are many things to learn about MG. Please go to
Home to learn more. Or
Muscular Dystrophy Association to read more as well. There are certain drugs that can make MG worse, such as some antibiotics.
Stay out of the heat! That tends to exacerbate MG quickly. Other things that can make MG worse are infections, surgery, stress, lack of sleep, and doing too much without enough rest.
What else can we help with? I'm a bit rushed this morning, but I'm sure others will chime in!
I hope you can find a neurologist who will take good care of you! In the meantime, take good care of yourself!!!
Annie